CLOVES Syndrome Research - We Love You Victor!!
A nonprofit fundraiser supporting
Cloves Syndrome Community$7,871
raised by 47 people
$12,000 goal
TODAY IS CLOVES SYNDROME AWARENESS DAY!!
WE ARE HOPING FOR MORE SUPPORT TO THIS AMAZING ORGANIZATION THAT DOES AMAZING THINGS! THEY RECENTLY BROUGHT US ALL TOGETHER TWICE IN THE PAST COUPLE MONTHS. A CONFERENCE LOCATED IN BOSTON AND A WONDERFUL CAMP TO RELAX, EAT AND SPEND QUALITY TIME WITH OTHER FAMILIES!
Not to mention all of the amazing things they are doing to support other families and research. The organization has been a life saver to our son and other families, literally! I don't know where we would be or what we would know, had it not been for this organization! Thank you for your support of CLOVES Syndrome Community!!
Here we are almost one year later! We still have the hope of getting Victor on the drug PIQRAY (formally BYL719, it has now been approved - only for breast cancer) We are waiting for test results of a tissue biopsy and to get in and see a local oncologist to write for the drug/compassionate use.
We're reaching out to you, our friends and family, to ask for your support of Victor and others living with CLOVES Syndrome. There are approximately 500 people diagnosed with CLOVES Syndrome currently. Jerry and I have set a very optimistic goal of raising $12000 (Counting the previous year and going forward!) CLOVES research before the end of the year! We need your help to reach this goal! We greatly appreciate that you are able to support our fundraiser.
Here is a video of Victor playing after surgery at Boston Children’s!
Victor is our amazing handsome boy that is defying all odds! Despite his major complications of CLOVES being an enlargement of the right side of his brain and spinal cord, along with complications of polymicrogyria, pachygyria and disorganized grooving of several areas in the right side of his brain we have been able to control his epilepsy. He is currently on 3 medications to control his epilepsy.
CLOVES Syndrome affects every child differently and no 2 kids are the same! They are all beautifully different from each other, and each individual has their own set of complications.
CLOVES Syndrome stands for Congenital, Lipomatous, Overgrowth, Vascular Malformations, Epidermal Nevi and Spinal/Skeletal Anomalies and/or Scoliosis.
CLOVES is caused by a somatic genetic mutation in a gene called PIK3CA that increases the activity of the gene. CLOVES belongs to a category of diseases known as PIK3CA-overgrowth spectrum or PROS.
We have always hoped and dreamed for a miracle drug that could help Victor - but were skeptical that any drugs would come to the market any time in the near future - especially since this Syndrome is so rare and every child is so different.
A study published in June 2018 surprised and amazed us with it's incredible results, showing the reversal of CLOVES related symptoms and disease progression. This is such exciting news and gives us hope that it may too improve Victor’s brain and spinal cord overgrowth as well as possibly helping with his seizure control as well, as preventing possible future complications!
The CLOVES Syndrome Community Organization wants to seize the opportunity and forward momentum that is happening now for CLOVES research and potential treatments, to bring these new options to fruition.
The CLOVES Syndrome Community is ready to move additional research initiatives forward for CLOVES Syndrome Community, and has a goal to raise $20,000 to support research!
We have been trying to think of some creative ways to give back to our friends and family that support the CLOVES Syndrome Community and our goals to get this drug to market! If we are able to reach our goal of $5,000 by the end of the year, than based on availability we will give away a week vacation through our timeshare to the top donor. If we are unable to meet the goal than we will give away a promo week to the top donor - of their choice based on availability - with the next promo after the new year. We will also be looking into raffle prizes for everyone that donates to be entered in to win! The raffle prizes are still being determined and the page will be updated with the prizes. Raffle tickets will be as followed -$1,000 - 250 tickets $500 - 100 tickets $100 donation is 15 tickets. $50 donation is 5 tickets. $25 donation is 2 tickets. Numbers will be assigned in order of donations and a random number picker will be used. Raffle prizes will be the choice of the winner in order of their number picked. So, the last prize will be assigned to the last number choosen. Thank you so much for the consideration and good luck!!
Here is a link with some info on the recent success story of BYL719!